Why More Women Are Getting a Double Mastectomy

Recent research has shown that despite having more treatment options, women with cancer in one breast are increasingly choosing to remove both breasts—even though experts in the field say the procedure is not necessarily accompanied by better outcomes.

Now, a new study published Wednesday in JAMA Surgery finds that the increase is being driven in part by their surgeons.

Doctors generally discourage contralateral prophylactic mastectomy—also known as CPM, or the removal of a healthy breast when the other has cancer—for women at an average risk for additional breast cancer. They do recommend it for women at a higher risk, like those with a BRCA gene, which greatly increases the risk of getting the disease. Even so, the rate at which women with cancer in one breast choose to remove both has increased nearly six fold from 1998 to 2011, largely among younger women with early-stage unilateral breast cancer and without genetic risk factors—in other words, women who are candidates for less aggressive treatment.

Survival for these women isn’t higher than it is for women choosing less aggressive options like lumpectomy. Also called breast-conserving surgery, only a portion of the affected breast is removed. A March 2016 study of 4,000 women who had breast cancer surgery also found that removing both breasts did not markedly improve a woman’s quality of life in terms of breast satisfaction and their physical, psychosocial and sexual wellbeing.

“Unless a woman has a gene mutation that places her at significantly increased risk of a new cancer in the other breast, CPM doesn’t prolong life and our study shows that it doesn’t make for a notably better quality of life,” senior author Dr. Shelley Hwang, chief of breast surgery at the Duke Cancer Institute, said in a statement about the 2016 findings.

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There are likely several reasons for what experts are calling a “surge” in women undergoing CPM—including a woman’s doctor. The new study found that a woman’s surgeon accounts for about 20% of the variation in rates of women removing both breasts.

In the study, researchers surveyed 5,080 women with early-stage breast cancer and an average risk for cancer in the other breast, along with 377 of their surgeons. They found that while the doctors largely agreed on what they would initially recommend—breast conserving surgery over CPM—there was variability in what was ultimately performed.

A woman had only a 4% chance of undergoing CPM if she went to a surgeon who was the most reluctant to perform the procedure and most favored breast-conserving surgery. But if a woman went to a surgeon who was classified by the researchers as most open to performing CPM—even if they may not have recommended it at first—and favored breast-conserving surgery the least, the likelihood of getting CPM was 34%.

Surgeons reported that the most common reason for offering CPM, despite their initial reluctance, was “to give patients peace of mind” and “avoid patient conflict”—not to reduce recurrence or improve survival.

“The emotional reactions to cancer frequently prime patients to desire the most aggressive approach,” says study author Dr. Steven J. Katz, a professor in the School of Public Health at the University of Michigan. “Our results underscore that most surgeons today favor less aggressive approaches to surgery, and it’s challenging for them to communicate with their patients that bigger is not better.”

Katz says that women are increasingly hearing about CPM through the experiences of family and friends. In prior work, he’s noted that a person’s fear about cancer recurrence or the desire to avoid regret down the line could lead to a decision between her and her doctor to undergo more aggressive surgery, even if the likelihood for improved survival or higher quality of life are uncertain.

In a corresponding editorial, Dr. Julie Margenthaler and Dr. Amy Cyr, both of the department of surgery at Washington University School of Medicine in St Louis, argue that doctors should counsel their patients about the different treatment options in a more standardized way. “We offer decision-making autonomy to patients, but, in creating that autonomy, we have resigned to overtreatment, motivated by the desire to avoid creating conflict in our relationship with the patient,” they write.

Katz says that since there is variability in what doctors ultimately agree to perform, women may want to consider visiting more than one doctor before deciding on a treatment plan. His own research shows that 95% of breast cancer patients are treated by the first physician they see. “If a patient is not totally in line with what’s being recommended, get a second opinion,” he says.

Physicians, too, could improve at helping women make a decision. “Let’s build consensus and try to decrease unwanted variability between one doctor and another,” says Katz.

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